It was the annual celebration dinner for a community group where I volunteer. People wore their finest attire and mingled in the beautiful space, chatting ahead of the awards dinner. The sound was deafening, but I did my best to hear and partake in a variety of conversations using my surviving a cocktail party with hearing loss tips.
Finding my spot at my assigned table, I introduced myself to my seat mates. Luckily the majority had strong voices in the right decibel range for me to hear; and they were easy to lipread. The conversation flowed, bouncing from topic to topic, before my hearing loss and related advocacy work came up. Yes, I try to slip it into every conversation — that is what advocates do.
Their response: “But, you seem to hear just fine.” Part of me was happy that I was conversing so successfully — those lipreading skills do come in handy — but part of me felt almost slighted. Truth be told, this duck was paddling furiously under the water.
It Has Happened Before
This was the second time someone had said those words to me recently, so maybe it was the double whammy that struck a chord in me. The first time was at a week-long yoga workshop held at my local studio.
Before I signed up, I contacted the organizer and asked if I could speak to the trainers to make sure I could hear their voices well. I did not want to commit to 40-hours of only partially absorbing the material. After a couple of emails back and forth explaining why this was important, they were able to oblige and the teacher’s voices tested fine. I arrived early to make sure I had a good spot in the room and all went well.
At the end of the training, I thanked the studio owner once again for her flexibility with the voice test and she replied with a slightly skeptical look on her face, “Well, you certainly seemed to hear just fine.” “Yes,” I replied, “that’s because I did the work upfront to make sure that that would be the case.”
Should I Take the Comments Personally?
Why did I take these comments so personally? Did I feel like I was being accused of faking my hearing loss? Did I feel unappreciated for the enormous effort I had put forth to hear? Did it feel like she was making light of the challenges people with hearing loss face? I wondered if I should struggle more next time to advance the cause. Or was I just being cranky after a long bout of listening effort? It is hard to know.
In any case, it once again reinforced the notion that hearing loss is almost impossible to understand unless you have experienced it yourself. Why do we hear well in some situations, but not in others? Why are one person’s hearing challenges different from someone else’s difficulties? Why are some people easier for us to lipread than others? I can see why it is confusing for the uninitiated.
As people with hearing loss, we must continue to educate, and explain, and advocate for what we need in very specific terms. And when someone tells us that we seem to hear just fine, maybe we simply reply “Thank you.”
Readers, do you ever “seem to hear just fine?”
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I’ve gotten this many times over the years–often with the skeptical tone you mention. I’ve come to respond with something like: “Seems” is the operational word! that’s the tricky thing about an invisible disability. I missed a lot of what you assumed I was getting, but made do with what I could lipread or hear. It’s not easy.”
That usually helps.
Good suggestion. We need to keep educating others about hearing loss. Thank you for sharing your idea.
My husband sometimes says you did well today. Then I explain to him how I take my cues from other people for smiling and head nodding. And that sometimes I really do do well. And that other times I’m just too tired after a while to care and just tune out. We do the best we can and sometimes others don’t notice. It’s just when someone asks you a question and you lost the thread of the conversation a while ago….
Good luck to all on Thanksgiving – that’s a difficult one!
So true! Thanks for sharing your experiences. Thanksgiving post on the way for next week!
Yes, Thanksgiving is hard as all my kids have high ceilings and the sound just echoes. I used to wish my ceilings were high,now I’m glad they are not! I miss a lot of what everyone is thankful for which I wish I could hear. My mother was deaf and only now do I understand why she , who was a great talker,would just sit quietly at such gatherings,–she couldn’t hear what was being said when everyone talked at once. So often I have tried at various gatherings to get people to speak one at a time, but it is a losing battle. but one good thing has happened–I tried to watch my favorite soap online which was always hard as I had to guess at most of what was said, Yesterday I found it has closed captions! I don’t know if this is new or I just didn’t see the icon before! They are a boon!
Have used closed captioning for years! and oddly enough, my hearing kids are so used to it they stream shows with the captions on! (FYI: If you have young children, use the captions during their favorite kid programs. Hearing and seeing words at the same time is a great early-reading exercise.) I’m also fortunate that our movie theaters also have captioning glasses and boxes available. It’s a pleasure to go to the movies again.
My kids are used to them as well. I love them too!
I have one friend that really gets it – often we’ll be out, and she’ll just look at me and ask if I’m hearing what’s going on. I so appreciate that! Then she’ll tell me what was just said.
“Seeming to hear just fine” was probably the greatest barrier to my advocacy efforts during my career. For almost 30 years, I worked for a well-known theme park / resort company near Orlando Florida. During that time, I tried to promote accessibility for both the guests and for the employees. Captions, quiet spaces, well-maintained ALDs, etc. I even lobbied for hearing aid coverage in our benefit plan. I suppose the powers that be just didn’t get it, because I seemed to hear so well. But Looking back, I know that there was so much I missed.
That is fascinating. Thank you for your advocacy efforts and for sharing your experiences here.
This really touches a chord. Last week I attended a regular meeting of a local non-profit and struggled to follow the flow of conversation. Last night I attended another meeting of the same group in the same room and I was able to understand most of the conversation. What made the difference? Well, several things including who was speaking, how they were speaking, whether the ventilation system was on or off, what type of meeting (lecture versus free-ranging discussion from multiple speakers), whether I felt tired or alert, etc., etc. Hearing and understanding are so situational. At the meeting last week, someone commented that I seemed to be lipreading very well. I replied that I am getting better at it but still struggle to understand at times. This person meant well, but had no idea how hard I working to keep up!
Well said — hearing and understanding are so situational. That is part of why it is hard for others to understand how much effort is involved. Thank you for sharing your thoughts.
Great post Shari. I get the same all the time. And it irks me too. And i agree, it must be because it is so invisible.
Exactly. And probably the fact that our ability to understand varies so much from situation to situation. Thank you for your comment.
I had the same comment last week when I was more or less able to hear and predict what was being said by a friend sitting at the far end of a table from me in a noisy cafe. Knowing the voice and habits of the speaker helps! I actually appreciated that I was asked about my ability to “hear”. I feel that people who make this kind of comment have at least thought about hearing making them more likely to take on board explanations.
That is an interesting point. Thanks for sharing your experiences.
I love the duck. In most social settings I am, along with anyone else with significant hearing loss, paddling like crazy trying to keep up: changing processor programs, changing positions, seriously considering whether or not to retreat to the delicious silence of my car and go home.
It’s Thanksgiving again. Eight old friends are gathering for three days in a palatial home in North Conway NH that’s owned by one of our number. They all know about my hearing loss. They all know the drill. We’ve been doing this for years. You would think it would get easier.
I’ve doubled up on my paddling practice.
Good luck! At least your friends know the drill. Take breaks as you need them. Happy Thanksgiving!
Yep, coping well can be double-edged sword. I’ve gotten a version of “You seem to hear just fine,” many times over my lifetime.
How these comments are received depends on how the person says it. If there is some skepticism in their voice and facial expression, I educate them a little. However, most of the time people are well-meaning and say things like, “You do really well.” or “If you hadn’t told me, I never would have known you couldn’t hear.” My response there is, “Well, I began losing my hearing as a child, so I have a lot of practice. I’m a really good lipreader, and I picked up a lot of other good skills along the way, but it’s still a lot of work to concentrate to hard.”
I’ve come to realize that it’s okay to put those few rude people in their place with a little education－because let’s face it, some people need to learn humility－but it’s not done with malice, I simply want them to be kinder to the next ‘different’ person who comes along.
Education is key. Thank you for sharing what works for you.
Those who have good hearing at meetings or events if friends need to reminded YOU have a hearing loss. Wear hearing aids, the key work is aid.. it does NOT give normal hearing to the individual. I am a retired nurse and when I received the aid, I as told you don’t have to hear every word, you can put together the gist of conversation. No one can’t if one depends on communication in their profession. That is a lot different that just chats with friends. It’s easy to forget one’s friend is deaf when using clues such as facial expressions.. I figure if they are smiling, the news is good, if frown, there is a problem.. Even with close family, and after 20 yrs of diminished hearing.. frequently “left out” of conversations.. Hearing people don’t mean to be unkind or uncaring. My hearing loss came in one day, viral infection and on an Island were medication was not available. 10days later I awakened to no sound.. even with hearing aid, 0 on left side and 35-45% on rt . Without hearing aid I hearing nothing, I’ve had some life changes in last year and weight change and my hearing aid slips out… chewing, talking and when I went to check on change in mold, was told needed whole new set. 8000. Said I really didn’t need to hear that expensive.. It was to be a Cros Lt side and aid of Rt. At 89 and nursing home expenses. It’s a bit dear when I read lips. One has to see to hear well and do fairly well. Patience is the key for us who can not hear well, reading lips I think is essential. It won’t be a 100% but it’s worth the effort. I have never had a hearing aid where I’ve heard well.. always needed lip reading and Do miss a lot in the past 3 yrs. as I have aged the hearing I had is also diminishing.. I thank God every day that my handicap isn’t worse..
Those who comment you have done well, mean it as a complement. I do know that fatigue happens when trying to hear in certain circumstances. Sit is front, and do let group know you are hearing impaired. Meaning speak to me… working as a professional, hearing is important and each client/patient when we first meet, tell them I’m hearing impaired. It worked for years. On phone, Caption Phone has been a godsend, it’s free and wonderful..
Thank you for sharing your story.
I am one year out from having complete deafness in my right ear from a tumor–I only hear the tinnitus which actually gets louder in noise. In addition I had gait/balance issues, but I am a vendor at craft/vendor shows and Expos where there is lots of loud conversation, swirling foot traffic for me to navigate, trying to sort out who’s actually talking to me and who is just a voice in the sea of voices. While talking to customers in my own booth, I turn my “good ear” to try to hear what they are saying, often have to ask them to repeat, I wear a button indicating I can’t hear in that right ear, but if anyone comes up from behind, I don’t know they are there. And not only is that startling and difficult, but also causes dizziness to be startled and to whip around lest I step on someone. I am exhausted at the end of a show and can barely function, and i’m not sure if that’s from trying to hear, using my newly acquired vestibular skill accommodations from therapy, or the hole still left in my brain from the tumor.
Sometimes I know I put too much weight on a word like “seem.” and it ‘s hard to know the motivation behind the comment we’re getting offended by. Simple words like prepositions change meanings and intents too, and since I’m not always hearing what I think I am hearing, I often wonder if i heard/read intent incorrectly. I like Carolyn’s response to seems, though.
It’s only been a year and I’m exhausted from advocating for the many facets of my invisible disease and invisible symptoms and the ones that can be seen, too, like my facial paralysis/synkinesis where facial nerve damage was a side effect of the vestibular nerve tumor. In some ways 10 months of therapy and learning to respond to the dizziness issues was far easier than the deafness and loss of identity from facial nerve damage. Nobody thinks those should bother me because I’ve “come so far” in my healing process. I’ve been enjoying this site. I feel more normal knowing where there are others struggling with some of the same issues that i am and I don’t feel like I have to “explain.”
Thank you for sharing your story. You are definitely not alone.
I heard that from an audiologist while testing me. I went to another audiologist, needless to say, who said that I have only 20% hearing ability in one ear! So, no, I do not hear well!
And what no one understands and you have written about before, is just how exhausting it is to try to hear like a “normal” person! After a cocktail party like that, I would have had to have had a few cocktails myself in a very quiet room afterwards!! 🙂
It is exhausting! Thank you for your comment.
I’ve had people say those very words to me. Sometimes it irritates me, other times I just don’t care. I know most people don’t understand what it’s like to have hearing loss. I’ve challenged a few people in my life to wear ear plugs for a few hours while running errands. While this doesn’t exactly match my type of hearing loss, they at least have an idea of what mild hearing loss is like – although temporary. They get a taste of how much energy is used to hear and what environments are easier to “hear” in. At the end of the ear plug challenge, their response is “I don’t know how you do it” and I see the relief they get by removing the ear plugs. I tell them I don’t have a choice, I just do the best I can. It’s opened a path to some positive in-depth dialogue. Sometimes I think we should have a global “temporary hearing loss” challenge like this. Maybe that would create more awareness as to what living with hearing loss is all about.
What an interesting idea. Thank you for sharing it.
I had my co-workers do a temporary hearing loss test for maybe 10 minutes so that they could see/hear what I was going thru with a cochlear implant in my left ear and a hearing aid in the right. They did not realize how hard it was for me. I was in customer service and had to finally retire when it got so bad that I could not hear on my phone. I agree that everyone should try if for some time.
Thanks for sharing.
Great post.
Thank you for reading!
I realize my mom had dementia before she passed away in August, but whenever she uttered these very words to me (more than once) I was devastated. She never believed I had a hearing problem because I wasn’t “born that way” (a nod to Lady Gaga!)
So sorry you had to go through that. Thank you for sharing.
I miss a lot. I have profound hearing loss and am scheduled for a Coclear implant in January. People just do not understand how difficult hearing loss is. Maybe you can’t unless you experience it personally. I have a friend , who I have known many years, try to tell me a story over the phone (which streams into my ears) the other day, When I asked her to repeat a couple of times, she got annoyed and said “why don’t you listen? I answered “I am listening. Remember, I don’t hear!’” I asked her to slow down and she said, “well, , you said you had to get off soon so I wanted to tell you quickly. “
It is hard to balance all the factors. All we can do is keep asking for what we need. Thank you for your comment.
Boy do I relate! Thanks Shari for highlighting this – your article was spot on. I often get asked stuff like – “how come you can hear me in this bar, but in the last one you claim you couldn’t tell what anyone was saying?” Or “you aren’t really deaf because you can hear” or “you know, I think you have selective deafness for when it suits you”. Grrrrr 🙂
It is so hard for people to understand! Thanks for joining the discussion.
I am to have a cochlear implant, easily met the criteria.
My son recently banished me from his life because “You do not try hard enough to to hear and understand.” Though my situation is the radical end of the remarks directed to you, I empathize. Trying to hear is at the crux of what we expend enormous effort upon and is completely under the radar of people’s understanding. Maybe we need to educate people about THAT!
Thank you for your thoughtful columns, Shari.
I am sorry you had to go through that. I wish you lots of luck with the CI. That is exciting!
I always precede or at least throw into the conversation that I am now deaf and hear only with my CI processors. Recently, I was in and Apple store hear in the Miami area. for an upgrade my iPhone. If you’ve ever been, its quite noisy there – cacophonous – a real melee of noise. Having a conversation with someone can be a real challenge. The Apple employee I was speaking with and mentioned “Im deaf” had a look on his face of astonishment – similar to “You appear to hear just fine”.
I made it through our conversation and understood his answers to my questions pretty well. And I am not the greatest lips reader at all.
It is loud in there! I can understand the challenges you must have faced. Well done, that you persevered.
Not sure if this related to the topic of discussion but a common expression I heard growing up and still exist today is “You don’t Listen.” Hearing loss in varied situations and environments is difficult to explain to people. I have not yet mastered it.
Yes, that is a frustrating one. Education is and continues to be ongoing. Thank you for sharing your thoughts.
Oh, yes! It really is “fake it until you make it,” isn’t it? Started losing my hearing as a child, so I lip-read without even thinking about it anymore. And yes, hearing is very situational. After years spent hiding it (hearing aids as a teen = social suicide), I am finally more comfortable advocating for myself, because if I don’t do it, who will? If that means requesting a booth at a restaurant, ordering theatre tickets FAR in advance and learning about the show ahead of time, using a caption box at the movies, so be it. And trust me, I educate anyone with a minute to listen. Hearing aids make me functional – they don’t replace what I’ve lost. So many people do not understand this.
So true! Good for you for your self-advocacy efforts. They are so important for quality of life. Thank you for sharing your thoughts.
I’ve gotten this remark many times in my 58 years. Ironically, most of the time it’s from family members. Insulted, no but I have felt like I’d done something wrong and I had to defend my self. People think hearing is something you can turn on and off, equipped with volume control. As I’ve gotten older, I’ve gotten better at standing up for myself. But there are times I’m taken back to my childhood days, ready to burst into tears.
I know how you feel. Thank you for sharing your experiences.
Had this happen recently, and from a “friend” who knows I have a profound loss. I was hurt, and as others mentioned felt as if I was leaning into the “faking” it definition. But I realized, I put a lot of work into the interaction. I ‘surveyed” the surroundings, watched what was going on, watched peoples’ expressions, watched what they were looking at…all while dealing with a different customer….so when I felt it was right I popped in with a response to what might be a question from them. I had no idea if they asked it or not, but I responded.
No one can see those invisible efforts. No one can understand the process it takes to deal with one seemingly simple interaction. Few understand the need for “non hearing time” after too many of these efforts.
How do you explain I can’t hear the music but I know the song.
So true. It is funny that once someone tells me the song I can hear it in my head and sing along. Thanks for sharing your experiences.
Great article. I’ve shared it to my french community (mostly cued speech users).
I relate a lot. I also got a lot of “you hear when it suits you” which annoys me to the utmost.
I still can’t find a accurate way to explain how being deaf gives you some really bad statistics regarding hearing, understanding, processing and acquiring every single sounds.
Some days you feel like a superhero conversation are flowing, somedays you look at the person adressing directly to you but nothing, absolutely nothing clicks, it’s pure gibberish in your brain.
The image of he duck paddling hard below the surface is really good. I’d share it.
So glad it resonated with you and your community. Thanks for your comment.
A female work colleague who is blessed with speaking loudly all the time often comments that I can hear her when she is stood near to me, which in truth I do “hear” a lot of what she says when there is very little or no background noise, but what she doesn’t get is that although I may “hear” her I don’t understand what she is saying.
Often I feel I’m accused of having selective hearing “You can hear fine when you want to” is a comment that some people use, though not my husband, he knows better than that!
I often get the impression that because people can see my BTE aids and moulds, they assume I should be able to hear and understand perfectly, when the truth is that with my hearing aids I understand about 40% of what is said and lipread to guess the rest.
I firmly believe that hearing people can have no comprehension of what it’s like wearing hearing aids, especially high power aids like mine, and that while they do help make a difference to the small amount of hearing I have, they do not provide perfect hearing.
Ian
Very true. Thank you for sharing your thoughts.
Your writing truly resonates with me, Shari. One comment I won’t forget came from a parent of one of my students immediately after an initial IEP meeting. When I disclosed that I also have a hearing loss, as her child does, she teared up. “But you speak so well,” she said. “Now I know that my child will be in good hands in your classroom.” Or she said something to that effect. At that moment, I was okay with her comment because this parent had been on the fence about our school’s ability to meet her child’s needs. So I didn’t take offense to the comment “But you speak so well.” But really…can’t a person with hearing loss “speak well”, or is that one of the many stereotypes the hearing loss community must endure? So if I can’t clearly hear my own voice, does that mean that my ability to speak well is some kind of superpower? Sarcasm aside, I think you have helped inspire another topic for my blog, LipreadingMom.com. Thank you.
Thanks for sharing your thoughts.
Thanks for discussing what I call Strategy. It is as important as our devices, Hearing Aids (HA’s) and or Cochlear Implants (CI’s). i like to think that living with a hearing loss requires a three legged stool approach. 1 are hearing devices, HA’s and or CI’s. 2. Is strategy and 3 is technology, apps, captioned phones, etc. we need them all.
Well said. Thanks for sharing your thoughts.
Interesting bit that put some of my feelings into words. My child has hearing loss and I have heard so many times “well he seems to hear fine”…”he is hearing me without his HA in”, etc.
I so often do my best not to become offended as my hard work and advocacy as his mom have helped him in his listening and spoken language. Thank you. I’m glad I found a source to help me journey through the advocacy adventure with my child.
Thank you for being a part of our community.